"We thought we'd have to teach our son about the world. Turns out we have to teach the world about our son. They see a boy who cannot speak. We see a miracle who doesn't need words." -unknown

Monday, March 30, 2009

Retard.Retarded.Maybe you’ve said it casually or heard someone else use it in conversation. “I’m so retarded.” Or “He’s such a retard!”Chances are you weren’t talking about someone who was actually retarded.You probably didn’t think twice about using the word.Or that it might be offensive.According to Webster’s Dictionary the definition of ‘retarded’ is: “slow or limited in intellectual or emotional development or academic progress.”When it comes down to it Noah is ‘retarded.’ He is a ‘retard.’ Of course that isn’t how we refer to his disability. More commonly we use the words developmentally and intellectually delayed to describe some of the effects of having Trisomy 8 and C.I have never been one to worry about “political correctness.” Yet I find the casual use of the word ‘retard’ or ‘retarded’ offensive. I find myself bristling when it is used in conversation - even by friends who have welcomed and loved Noah from the day he was born. While I wasn’t ever a casual user of “the word” obviously Noah has dramatically changed my view - enough to speak out publicly. I find the casual use of the word ‘retard’ as offensive as I’m guessing most African-American’s would find the ‘n’ word, or homosexuals would find the word ‘fag.’Why all this talk about a single word? On Tuesday, March 31, events will be held throughout the US and around the world to “Spread the Word to End the Word.” The goal is to raise awareness and make people think about their use of the word ‘retard.’“It defies rational thought to why you would pick on that group. There are 190,000,000 kids and adults in the world with intellectual disabilities… 7.5 million in the United States. When you pick on that group, you’ve picked the perfect storm of cowardice to exercise your {hatred} … because they are not going to return serve. Because that’s not what they are equipped to do. They are equipped to {hug} … not {fight}. So why pick on that group? It doesn’t make sense.” Actor and activist John C. McGinley of the hit show “Scrubs,” said of the goal to “Spread the Word.”Tuesday I’m going to spread the new R word Respect.Susan

Thursday, March 19, 2009

Noah and I went to COSI with his class yesterday. We had a fun day.Noah seems to be getting alot stronger in his trunk. I've taken a few pictures of him. I will try and post them soon.He didn't seem quite himself when I dropped him off at school ths morning. Hopefully he isn't getting sick and that he is just tired from his big day yesterday.Susan

Noah continues to do well. We are trying to plan for our trip to Canada in May. We have enough money for the ABR therapy. We just need money for traveling,food and a place to stay. We are planning on staying at the Ronald McDonald house again. I've listed a few things on Craigs List to sell. I'm hoping and praying to be able to make enough money. We need to continue our journey with ABR. Noah has improved more in the last 4 months more than ever has since we started this journey 11 years ago. I can finally see a better quality of life for him.Is there anyone out there that is good at finding grants. I read on another childs website that his mom was able to get a grant that will pay for ABR.They live in Kentucky. I was hoping to find something in Ohio as well. That would be an answer to prays. We could continue with ABR and not have to worry about paying for it. If you can help me with this please let me know.Susan

I woke up to Noah jibber-jabbering in his bed this morning. I haven't heard that in along time. Usually I wake up to him banging the side rails over and over. I think I prefer to hear his sweet little voice.Susan

Noah ROLLED OVER!!!!!! On Thursday we had Noah on his belly and he rolled over to his back. Then on Friday he rolled from back to belly. Noah had rolled over for the first time years ago but, in the last several years he stopped doing it. Not sure why..... maybe he just got too weak. Not sure.... We are so excited to see him start doing it again. He is really starting to get himself into all kinds of perdicaments. See the above picture..... The girls are also learning not to lay their purses on the floor. He now cleans them out for them all over the floor.

We just got back from our ABR Chicago Satellite yesterday in time to celebrate Emily's 15th birthday. We learned 4 new exercises. They are... 1. Ear Cavity ( This one will help with his muscles on the side of his neck.) 2. Lateral Mouth Floor.(This will help with his swallow and his ability to talk.) 3. C7 Shoulder Blade (This will help with the strength and stability of his arm.) 4. Manibrium ( This is where his chest wall meets the bottom of his neck. It will help the strength of his neck as well.)Gavin (the instructor) was very pleased with Noah's progress from the other exercises. Overall it was a great weekend. We can't wait to see what the results are in the next 3 months with the new exercises.Happy 15th Birthday Emily

It's been three months since we started doing the ABR therapy on Noah. I spend half my time thinking 'only' three months, and the other half thinking it seems like so much longer. Doing the therapy is certainly not the easiest thing for me or Susan to get through (a solid hour each day with each of 3 different exercises=3 hours a day), but the benefits are showing themselves to us. Noah's body is different, although it's hard to pin down exactly how. He worked his way through a cold a few weeks ago and never even needed any anti-biotics. That's a first, and we're thankful for it.We travel to Chicago next week (we leave on the 18th and we'll be back on the 22nd) for a re-evaluation of Noah, and to learn some new exercises. Thanks to all who check here and thanks to all for so many prayers. God bless you all!

Well Noah got one thing he wanted for his birthday yesterday... a jammie day (a snow day) But he also woke up with a 102.4 fever and a cold.:( I took him to the doctor this morning. His doctor said his lungs are clear and it is just a cold. So far today he hasn't ran a fever. Please pray that it stays just a cold and doesn't get any worse.Susan

HAPPY BIRTHDAY NOAHI can't believe my little guy is 11. Somedays it feels like it was just yesterday he was born. Other days it feels like forever. When his birthday comes I like to say we are celebrating one more year with Noah. Because there were times that I thought he may not live to see another birthday. This year I'm seeing him not just living but thriving. I will save all the changes we and his therapist are seeing for another post. This post is to celebrate his birthday.HAPPY BIRTHDAY NOAHWe love you

When I dropped Morgan off to go sledding Emily took Noah down a couple of times. It was his first time to go sledding. He loved it. I had his mouth covered so you can barely see his eyes. Emily said she could hear his happy sounds on the way down. I was a bit afraid he would get sick from being outside but so far he hasn't gotten sick. YEAH!! I will defintley have to take him again. My calves sure do hurt from carrying him up the hill 3x. It was well worth it!!

It sure is snowing here lately. Morgan is going sledding with friends later today. It has snowed some much today that they cancelled church for this evening. I guess we will have another jammie day. Noah has had quite a few jammeie days lately.I found this the morning and just had to share it....While he is sleeping….I had a special little child not so very long ago.Since then my life's been different in ways I could not know.He isn't like other kids,who happily run to school.He cannot play the games they playor understand the rules.But when my child is sleepinghe's just like you and II sit beside his bed at nightand sing a lullaby.When others stare at this little boyit wounds me deep inside.They cannot know how much it hurtsor see the pain I hide.And when the other childrensimply turn and walk away.I watch him sitting all alonewhile they run around and play.But when my child is sleepinghe's just like you and me.I hold his hand and tell himall the things that he can be.I never thought I that I would beara special child like this.It broke my heart to think aboutall the things that we would miss.I used to feel so sad insideand I cried a million tears~I wanted so much more for himthan the pity of his peers.You see......when my child is sleepinghe's just like you and I.I say a prayer each evening"God bless this little guy and may he grow big and strong."It's hard to see your little oneas he tries to understand.And it hurts inside when other kidswon’t lend a helping hand.But we've grown together in such a waythat other mother's can never know.And I wouldn't trade him for the worldbecause I love him so.Because, when my child is sleeping he's just like me and you.I'm blessed to have this little childand I know he loves me too.~AnonymousI will leave you with that,Susan

Noah and the girls went back to school today for the first time in 17 days. Noah let us know he didn't think it was a good idea when he growled at his teacher when he saw her.Noah and I went swimming yesterday. He loved it!!! We got Noah and the girls a Y membership (with a nice discount) for Christmas. We are hoping to go every weekend.Hopefully Noah can ward off another sickness. Emily woke up with the flu yesterday. She felt well enough to go to school today.Thanks for checking in on Noah and the rest of the Sheaffer clan.

We had a great Christmas. Noah received alot of movies to watch during his 3hrs of therapy everyday. The girls got their own digital cameras. Scott,Morgan and I woke up yesterday with the flu. Hopefully Noah won't catch it next.Susan

I came here to tell you about the program and I see Scott beat me to it. It was awesome!!!! Morgan was a bit (alot) upset. But, someone stepped up to help Noah play a drum instead. I hope this means that I won't have to fight for it the next time. Our Sunday School Program is this Sunday. Some of the high school band is playing some music. Emily is playing her saxaphone and Morgan will be playing basoon and helping Noah play the keyboard for a few songs. We can't let all that practice go to waste, now can we?Merry ChristmasSusan

You should have seen him. It was so awesome to watch Noah onstage with his class last night. He had help by an aide in banging a drum in time with the music while his classmates played their recorders. Noah was so obviously having a great time, I couldn't help but smile as I watched. It means so much to me to have Noah included in things, and it was evident Noah likes it, too. Thanks for all your prayers and support. Merry Christmas!Noah's Dad

I'm happy to announce that Noah will be in the Christmas Program next Tuesday playing the keyboards with the help of his big sister Morgan. They were practicing last night together for the first time and they sounded wonderful. I can't wait. His teachers have some doubt whether Noah and Morgan can pull it off with such short notice. My kids are going to blow them away. Morgan and Noah need to practice with the whole class tomorrow and Monday. The show is Tuesday Dec.16th at 7pm.Thanks for checking in on Noah,Susan

I just needed to get this off my chest.... When I dropped Noah off to school this morning I asked about the Christmas program next week. All 4th graders are supposed to be in it. Well I found out today that the children were only using recorders. Since Noah can't play a recorder he wouldn't be on the program. I about lost it..... No one told me anything about this until I asked. I asked about Noah playing a different kind of instrument with hand over hand assistance. I was told that would take a teacher helping him and it wasn't about the teacher but Noah in the program and since he can't do it himself he couldn't be in the program. I then told them that I feel it was my decision to make and not theirs and that I didn't appreciate not being part of the decsion. I then told them that Morgan would love to help Noah participate in the program. I am still waiting for a reply. I will do what ever it takes so Noah won't be excluded.Susan

Tomorrow is Thanksgiving.... I’ve been thinking about what I’m thankful for.Morgan: What a beautiful, sweet, caring, talented, compassionate human being. Morgan is a breath of sunshine. She always puts others before herself. I love how she doesn’t hesitate to tell others about God. She is growing up to be a very mature young lady.Emily: How could I get so lucky to have you as a daughter. You have always have gone out of your way to help me with Noah. You never complain when I ask you to help out. With that I’m so grateful. You are so loving and always put others needs before yourself. You are growing up to be such a beautiful person.Noah: What a blessing to have around. He always has a smile and his laugh is truly contagious. He is such a brave little boy. He has gone through so much in his life. More than most people go through in a life time. For that he is my hero. I love how looks up at me with the biggest smile that his eyes disappear. It doesn’t say a word but, I know he loves me. His eyes say so much. "The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be another child like him. Pable Casals With that I’m truly thankful that God chose me to be a Mom to such a miracle.Scott: Without this brave man at my side I would not be able to walk this journey. He loves so well and I can only hope I am loving him well too."These things I plan won’t happen right away. Slowly, steadily, surely the time approaches when the vision will be fulfilled. It seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day" Habakuk 2:3Happy ThanksgivingSusanTomorrow is Thanksgiving.... I’ve been thinking about what I’m thankful for.Morgan: What a beautiful, sweet, caring, talented, compassionate human being. Morgan is a breath of sunshine. She always puts others before herself. I love how she doesn’t hesitate to tell others about God. She is growing up to be a very mature young lady.Emily: How could I get so lucky to have you as a daughter. You have always have gone out of your way to help me with Noah. You never complain when I ask you to help out. With that I’m so grateful. You are so loving and always put others needs before yourself. You are growing up to be such a beautiful person.Noah: What a blessing to have around. He always has a smile and his laugh is truly contagious. He is such a brave little boy. He has gone through so much in his life. More than most people go through in a life time. For that he is my hero. I love how looks up at me with the biggest smile that his eyes disappear. It doesn’t say a word but, I know he loves me. His eyes say so much. "The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be another child like him. Pable Casals With that I’m truly thankful that God chose me to be a Mom to such a miracle.Scott: Without this brave man at my side I would not be able to walk this journey. He loves so well and I can only hope I am loving him well too."These things I plan won’t happen right away. Slowly, steadily, surely the time approaches when the vision will be fulfilled. It seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day" Habakuk 2:3Happy ThanksgivingSusan

About 2yrs ago we moved Noah’s bedroom downstairs. At that time we would still carry him upstairs every few days to give him a bath because our full bath is upstairs. We then started to put his bath seat over the kitchen sink. That started to be a problem because of his long legs. I then found the stuff that the hospitals use. I started using that. I feel so bad about this. I would love to be able to give him a bath or a shower. But, a 4ft. 50lb wet noodle is hard to handle. We would love to make our home Noah friendly. But the cost of that is way beyond our budget. We have learned to make the best of what we got.When we were on our way home from Canada Morgan and Emily called us and asked us when we might be home. They were planning a surprise. Scott and I said to ourselves... wouldn’t it be awesome if when we got home there would be Ty Pennington saying "MOVE THAT BUS" We weren’t greeted by Extreme Home Makeover but, two wonderful girls(and Grandma Sheaffer) and a clean house. It can’t get any better than that.Susan

We went to the doctor this morning. Noah has the flu. I guess that explains why Noah cried and pushed my hand away and told me" No" when I was starting the Abdomen excercise yesterday. He is running a 99 fever this morning. Yesterday it was 103.8.On a more exciting note..... when we were in Canda 2 weeks ago.. Leonid was able to move Noah's nipple all around even right into his armpit. I'm happy to say you can no longer do that. I guess we are getting more volume in his chest.Susan

The last few weeks we have been busy trying to work 3 hrs of ABR therapy a day into our already very busy lives. This is how our day on Thursdday looked like.At 6:30 I got up to see Morgan and Emily off to school and get ready for my day. At 7:10 I made Noah's breakfast and then fed, changed and got him dressed for the day. He then does his vest for 30 min. While he did his vest I did the dishes and ate my breakfast. By 8:15 we were out the door to get Noah to school. I then went to my Mom and Dads to help them with something. I then remebered that I forgot to take something to school for Noah. I went home to get it and take it out to his school. I then went home and did some laundry and cleaned up the house. I then took Noah's stander down the basement to make room for ABR bench Uncle Paul is makeing for Noah. I then got some chicken ready for chicken stir fry for supper. I then got things ready for Noah's ABR therapy and did some more laundry. I then went out to Noah's school to train and observe someone else feeding Noah. That way if Noah is able to go on a fieldtrip he can eat lunch with his friends. When Noah and I got home we did the excercise for his neck for 1/2 hr. We took a short break and then at 2:30 we did the excercise for his abdomen for 1hr. Morgan and Emily got home at 3:00. I talked to them while I finished up his abdomen excercise.After I was done I helped Emily finish cutting up the vegtables for chicken stir-fry. Morgan left at 3:45 for play practice. Scott got home from work at 4:00. We ate supper and then Scott and I left for Noah's IEP meeting that started at 4:30. On the way we dropped off Morgan's supper. Noah's IEP meeting lasted until 5:40. When we got home I did Noah's neck excercise for another 1/2hr. Then Scott did Noah's chest excercise for1 hour. By then it was time for Noah to do his vest for 30min.Then it was time for Noah to has bedtime snack and get to bed so we can start all over tommorow.As you can see our day was very busy. But, it will be all worth it in the end. We have already seen some small changes. We found out when we were in Canada that Noah's Adams Apple is all the way up and just behind his chin. Just yesterday I was very excited.... I actully saw his Adam's Apple.When Noah was talking it was showing itself. I found myself touching it and kissing it.Which made Noah laugh.Scott said' You are really in love with that Adam's Apple.aren't you" He was also very excited to see it as well. After Noah was done talking and laughing it hid itself again. We can't wait until its out for good. We are so excited about this small chage. It may seem like such a silly thing to most of you... but, to us its huge. Espicially after only 2 short weeks of ABR I can't wait until even bigger changes.Sorry about the long post. I hope I didn't bore anyone.Susan

On our way to Montreal, Susan, Noah and I stopped for a few hours at a comic book show in Niles, Ohio, where Adam West was appearing. We had made Noah a Batman costume for Halloween so we put him in it for the show. Sadly, Adam West had a slipped disk in his back and wasn't at his table signing autographs while we were there, but we had a blast meeting other Batman fans. Noah got a lot of free stuff from the artists in Artists Alley, too! He's got all kinds of neat stuff to hang up on his Batman wall. Scott Sebring, the other Batman in the photo, said Noah's costume was one of the best homemade ones he's ever seen. That made Susan and me feel good. It was a lot of work to make it.

We are Home!!!!!! We were in the car today for 13hrs. Boy were we ready to be home. Sorry about not posting the last few days. Everytime I tried to use the computer to update someone was using it. Then yesterday it was broke down and probably wouldn't be fixed until who knows when. We are so glad to be home. Montreal is too busy for us.Our week was very busy learning the ABR tecnique. We were told to take a 2 day break from it all and gradually work up to our 3hrs. Scott and I can't wait until we can get started. I can see it in Scott's face..... he finally has something to connect with Noah and be an active participant in Noah's progress.Thanks for keeping us in your prays this week. Continue to pray that this new therapy is our answer to a better quality of life for Noah.Susan

We had our first evaluation with Gavin yesterday. It was very informative. It gave a good perspective of how Noah will benefit from ABR, Today we have our evaluation with Mr. Blyum. It will take about 3hrs or more. They will video tape the whole time and take about a 1000 or more pictures. So far, the ABR process makes a lot of sense to us. We can see how it all ties together. And no one has looked at Noah and said anything but `Yes, that WILL get better with ABR.` It`ll be a lot of work (and years of time), but in the end, Noah should end up having a better quality of life, and that`s our bottom line.

Today was filled with alot of information to digest. We started practicing the tecnique on each other while Noah watched. He has been very good for the most part. You can tell at time he gets scared. He will start to cry. We keep telling him there is nothing to be scared about. I think he believes someone is gong to poke him with needles or something. Up until today he has just had to sit there and listen to people talk and watch Scott and I. It.'s our understanding that it was any easy day. If you were to ask us... it was tough. The few days are suppost to be harder. Wow....Tommorw he will be evaluated by Gavin to determine how the best way to help Noah. Then we will start leaning the tecnique on Noah.I need to go make it back to the room before Morgan and Emily call. We`ll update more tomorrow.Keep the prayers coming,Susan,Scott and Noah

We had our orientation this morning, and the process sounds amazing. I can`t wait to start tomorrow. Too bad we`ve got the whole day to waste. We don`t start till 5pm. We went grocery shopping today after the orientation, so we won`t have to brave the busy streets near Ronald McDonald House. It`s a madhouse around here. Even on Sunday, the main highways get clogged as well. We had to wait quite often on our way home this afternoon. It`s going to be a good week, though. . . I can feel it already. Keep us in your prayers.Scott

We just wanted to let everyone know we made it safely. We arrived at the Ronald McDonald House in Montreal around 3:45PM. It seems very busy here in Montreal. Noah did real well on the trip here. He was his normal self. (Not sleeping at all in the van) We stopped in Niles Oh. yesterday on the way here to see Adam West. Unfortunately that didn't happen. We found out he was having back problems and had to go back to his hotel. Noah did get to sit in the Batmobile again dressed as Batman and get his picture taken. He loved that.We need to be at the ABR Center at 10am tomorrow for orientation. I probably need to go check on Noah and Scott, They were both very close to falling asleep when I slipped away for a bit.I will try and keep you updated.Please keep us in your prayersSusan, Scott and Noah

I had to report some good news. I was able to reserve a room at the Ronald McDonald House this morning. It will cost us $10 a night. How cool is that? God is so Good. I've worried about not getting in at the RMH for at least 2 months. The next couple of days we'll be very busy getting things ready. Please keep us in your prays during this new adventure. I pray it will be all that we hope it will be. We plan on getting the girls from school Friday and taking them out to lunch before we start our journey to Canada.Thanks for all the Love and support,Scott,Susan,Morgan,Emily and Noah

Scott, Noah and I are leaving in 1 week. I've been talking about going for so long. Now the time has come to go. Wow!!! The money has been wired to them and we got our schedule:PRESENTATION: October 19 at 10:00EVALUATION LEONID: October 22 at 2:00 ( this is the creator of ABR)EVALUATION GAVIN: October 21 at 2:00TRAINING: October 20 to October 24 from 5:00 to 8:00So you can see there will be alot of down time. Hopefully we can find cheap or free things to do while we are there. I'm making my list of things to take with us. I hope I don't forget anything.On our way there we are stopping in Niles Oh. to something called Tiki Con. Noah and Scott are looking forward to meeting Adam West. Scott and I are making a Batman costume for Noah. It's turning out pretty cool. We will post a picture when we can.Susan

We took Noah to see the Batmobile last night. He even got to sit in it. He could tell he was loving it because he sat up so nice and not once did he put his head down. He kept looking at all the cool gadgets around him.Noah went back to the doctor yesterday and his lungs are clear and the doctor was very pleased on how well Noah looked.We are leaving for Canada in 17 days. Its almost time. I can't believe it. How can one person be so excited and scared at the same time.Take Care,Susan

The last couple of days Noah has been under the weather. In fact he has pneumonia. He hasn't been this sick in over 2 yrs. I kept asking myself..... what has changed to let Noah get sick. One thing came to mind.... about 3 wks ago when Noah had surgery the doctors decided that Noah may benefit from a medication that would help with his slobbering and the build up of mucus in the back of his throat. So now instead of Noah being able to spit out the extra saliva, it now was thickening up enough and going into his lungs instead. Which caused the pneumonia. Needless to say he no longer is getting that medicine. I would much rather wipe away a wet chin now and then. Its not like he soaked his shirt with it.I was checking another website and came across this:Someone I love relies on me in ways you will never understand.Someone I love endures pain and challenges that break my heartand renew my spirit at the same time.Someone I love is unable to advocate for themselvesfor things that most of us take for granted.Someone I love will never have the opportunities that every child should have.Someone I love will need unconditional love and support after I am gone - this frightens me to the core.Someone I love encounters pity, stereotypes, and prejudice at every turn, because they look, act, and/or learn differently than others.Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.Someone I love has needs that require more time and energy than I have to give.Someone I love has needs that mean I am not able to meet basic needs of my own.Someone I love has needs that have become the drivingforce behind major decisions my family makes.Someone I love has changed me in ways I will never be able to describe.Someone I love has taught me about love and about the reallyimportant things in life...Susan

Noah is still doing great. Even his consistent gurgle in the back of his throat is gone. Yeah!!We are planning our ABR trip to Montreal Canada. We decided to stay at Ronald McDonald house that is about 45mins from the center. It's only $10 or $15 a night instead of $90 to $120 if we stay in a hotel. In Montreal they even charge $10 a day to park in the hotel parking lots. We can park at the hospital parking lot for $25 a week. The only problem is I can't make reservations for the Ronald McDonald house until 3 days before we need to be there. I already have a note on the computer screen reminding to call ASAP on Oct. 15th.I'm so excited to be able to take Noah. I'm also scared to death about the whole thing. What if they look at him and say we can't help him. I'm sure they won't but I still worry about it. That's my biggest flaw.... A worry wart.I need to go and feed Noah. Thanks for checking in on Noah.Susan

Noah did great yesterday with his surgery. So well he woke up this morning jibber-jabbering in his bed at 6:15am. When I asked him if he was ready to go to school today, he said "Yes"Yes, the kids started school this morning. Where did the summer go? When I took Noah to school this morning he growled a little. I'm sure it will take a bit to get in the routine again.Morgan is excited she got her liscense last week She has really helped with all the running there is to do around here. But, she isn't complaing.:)Thanks for checking on Noah,The Sheaffers

Hi everyone..... Noah is doing pretty good. His ear tube surgery is scheduled for Aug. 26th, the day before school starts. Hopefully this will help him have a healthier winter.I have scheduled our trip to Canada for ABR. It is Oct. 19th to Oct. 24th. We have enough money for the training for the year. We still need more for traveling exspences and a place to stay each time we travel for retraining. This needs to happen three more times in the next year. I felt it was best to put the rest in God's hands. That way we could get started on this new therapy as soon as possible.Thanks for checking on Noah,The Sheaffers

First of all sorry about not posting earlier. The last month has been very busy here. The girls have gone to church camp, having been working on their 4-H projects and band camp has now started as well.Noah is doing very well. We went to the Cleveland Clinic yesterday to see the ENT doctor. He will have surgery in about 2wks for ear tubes. I just hope it's before school starts.On Tuesday the 5th our friend Don Reese is coming to Shelby to do a comedy benifit for Noah. It's going to be great seeing Don again. He is such a great friend.The Sheaffers

Noah started running a fever on Sat. 103.7 I took him to the doctor yesterday. He has an ear infection again. This time they finally decided to get us a referral for ear tubes. It's about time. Ear infections are the only thing that is getting him down right now. So probably in the next couple of weeks he will have surgery. He seems to be doing alot better today. He hasn't been crying and pushing his food away today.For all you Bashers out there....... See at the Bash!!!!!Susan

On Saturday Noah's therapy had a Learn to Ride a Bike Day. We took Noah over and he got to ride a bike. He loved it!!!! He held his head up the whole time he was on the bike. That was about a 1/2 hour. They were able to strap his feet onto the pedals. After awhile of someone pushing him he would pedal a bit himself. We need one of these bikes!! I asked Trent at therapy today about it. He said there is an agency out there that may buy one for Noah. That would be awesome. They run about $3000. Why does everything that would help Noah have to cost so much. Just pray that this agency will pull through and fast.Trent said we could borrow it for the Shelby Bicycle Days. So look for Noah there on his bike. He looks so cool on it.Take Care,Susan

Tuesday at therapy Noah did a great job His head control was awesome. He really loves his phisical therapist, Trent.The last several weeks of therapy Trent had a student working with him. Noah was getting tired of her working with him all the time. So he stopped working hard. When Noah got to therapy on Tuesay, he got very excited that it was just Trent and worked so hard for him. He even worked hard for his Occupational therapist. He was picking up some pegs stuck in playdough and putting them in my hand. It was so neat to see. YEAH Noah!!!!Today was Noah's last day of school. I got the most awesome thing in his book bag. It was his 3rd grade Alternate State Assessment for students with Disabilites. They tested him in two areas, math and reading. Noah got a 21 out of 24 in reading and a 24 out of 24 in math. It says that Noah has performed at the advanced level and meets standards for Grade 3 in Reading and Math. How cool is that..... I'm so proud of him. When I showed it to his Dad, Noah was smiling from ear to ear. He was so proud of himself too.Until next time,Susan

Sorry its been so long for a update. I see the last one was the day before Noah's Grandpa passed away...... I look back on all that now and can see a pattern with Noah. 2 weeks before he passed away, Noah and the family were visiting Grandpa. Grandpa didn't wake up enough to even talk to Noah that day. By the time we got home Noah was running a 103* He was sick for 2 weeks. Hardly even going to school. On April 24th. I took Noah to the hospital with me instead of going to school. ( Scott had got a call at 5:30am from his brother that his Dad wasn't doing well) At the hospital Noah was sitting in the hallway. About 10 mins. before his Grandpa passed away there was one tear running down Noah's face. ( I look back on it now and I'm sure his Grandpa had told him goodbye at that moment) After that Noah completly shut down. He hardly ever opened his eyes. I would feed him even if was asleep. And he slept a lot. I was really starting to worry about him. It was reminding me of ET. I kept telling him that he had a guardian angel now and Grandpa was always with him. Finally after the funeral Noah started acting better. You could see that Noah was finally at peace.Noah is finishing up his last few days of school. We told him last night that in 2 wks. we would be at Monster Bash. He got all excited and grinning from ear to ear.Susan

Noah is finally back in school. The last week and a half Noah has not felt real well. He had a ear infection and on Monday he had a virus. We don't like to see him sick but, the idea of him having just a virus is a welcome change from pneumonia. In fact I can't remeber the last time he was that sick. I'm about ready to pick him up from school. I hope he had a good day.Susan

Sorry about not updating sooner. Noah is so glad the Indians are playing again. Opening day he got so excited during the singing of National Anthem. Then when they won he got very excited again.We just got back from visitng Grandpa Sheaffer. Health wise Grandpa is doing well. He will be moved to rehab soon and then the hard work will begin. Noah enjoyed visiting his Grandpa. Grandpa responed quite well to Noah, making faces at him and he didn't mind Noah giving him love pats on his cheeks. In fact Grandpa didn't want him to stop. It was all I could do to keep Noah from "jumping" out of my arms to lay on his Grandpa. Noah did get to lay his head on his Grandpa's chest and give him a hug.Until next time,Susan

Noah is doing pretty good. Last week he ended up with an ear infection and a sore throat. We are just hoping the weather makes up its mind soon and stays nice. Yesterday was beautiful here 65* Today its cold and freezing rain. Hope they have school tomorrow. Not looking too promising at the moment. Noah just loves going to school to see all his friends.We are planning a Rumage Sale at our church soon to raise money for the new therapy we would like to try. Will up date when I can about the date. We are still in the planning stage.Thanks for checking up on Noah,Susan

Today, Noah and the rest of us lost a truly good friend. Ben Chapman (the man in the picture with Noah), the man who played the Gill-Man on land in the original Creature from the Black Lagoon back in 1954, died Thursday morning at 12:15am Hawaii time.Ben loved Noah and always had a hug and kiss for him when he saw him. We met Ben at the Monster Bash in Pittsburgh four or five years ago. He always struck me as a guy who was just happy people remembered him (especially in a costumed role in a 50 year old movie). He loved meeting fans and regaled everyone with great stories from his life.We called Ben Noah's third grandpa. We told Noah today that Grandpa Ben was an angel now. As someone else said, today the Black Lagoon is a little blacker. We'll miss you, old friend.

Noah is doing really well. His cough is just about gone. Bela is doing much better. Although she likes to get up at 4am to go potty. But, she will go back in her kennel with not much trouble until the girls are up getting ready for school.Thanks for checking on Noah.Susan

Noah and the girls got their new puppy last night. Its a yellow lab named Bela. She loves to lay next to Noah in his UFO chair and sleep. Its's so cute to watch. Noah will move his arm to wake her up and when she raises her head he laughs at her and then she goes back to sleep. Last night was pretty rough. She YIPPED from 10:30pm to 3:30am until Scott got up to be with her. We are hoping tonight goes a bit better.The Sheaffers

Happy Birthday Noah!!!!He had a great day today. He laughed everytime someone told him Happy Birthday. He seems to be feeling better. Although he got a bit worse again for a few days. Morgan was home from school on Thursday with a cold. So I think he caught something from her. His nose started running again but he didn't run a fever. He was still able to enjoy his birthday at school.Scott, Noah and I went to apply for our passports today. It will be about 4-6 wks to get them. We are going to Canada on April 19th for ABR.Susan

I didn't end up taking Noah to the doctor. He hasn't ran a fever since last Sat. I have been giving him Elderberry Syrup. Doctor Cole gave it to me last spring. Its a natural antibiotic. Noah is still coughing but, over all is doing much better. He didn't even miss any school this week. He is still the healthiest in the class.Susan

Noah is feeling under the weather. He ran a fever yesterday. 101.7 I was going to take him to the doctor today but, he wasn't running a fever this morning. Although he is blowing a lot of snot out of his nose. This afternoon he was running a low grade fever. 99.7 For the most part he is acting happy, but you can sure tell he doesn't feel very well. We are giving him breathing treatments and Motrin. I pray he doesn't get any worse. I may end up taking him to the doctor Monday just to make sure its just a cold. My thought is he may have a ear infection. We need to get him better for his birthday. I can't believe my little guy will be two whole hands in a week.Susan

I would love to wake up one morning and be just a mom.I don't want to be a supermodel or a moviestar or even a millionaire.I just want to be a mom.An everyday, plain Jane in khaki pants and a cute ponytail.Driving the minivan to soccer practice and ballet. Something so mundane so many moms take for granted and wish for something more. Yet when the alarm goes off there's meds to be given, labs to be checked. Rush to the doctor's appointments and get in some PT in between.No time for silly games and funny songs we've got OT and an IEP meeting to attend.I've got to make sure all of the "T's" are crossed and my "I's" are dotted so he doesn't get "Left Behind".I'm not just his mom, I'm his nurse, his therapist, his lawyer and his advocate.Who else will make sure his medical necessity letter is faxed off for his gait trainer?What I wouldn't give to wake up in the morning, hold my baby boy, kiss his sweet neck, sing silly songs all day and dance funky dances, play childhood games and drive my minivan off into the sunset. While someone else made sure all of the "P's" and "Q's" are in their right places so I could just be his mom---A. Henderson---I found this today and had to share it. This is so true.

Noah is still doing great. He had his first healthy Christmas and New Year. I remember other years sitting in the ER for New Years. Noah has a bit of a cough still but, he is still doing well.This year we would like to comtinue to help Noah be the best he can be. We would like to continue with HBOT and we are also looking into something new to try. It is called ABR, here is the website: http://www.blyum.com/ We'll have to travel to Canada for training. It's a therapy we can do at home. Its quite a commitment on our part Its going to take about 3hrs a day to do. But, it looks very promising.Noah has been in such a great mood lately . It's awesome listening to him laugh. It makes us laugh until we cry.Thanks for checking in on Noah.Happy New Year,The Sheaffers

Noah has been pretty healthy. In fact he has been the healthist in his class. Don't tell him I just said that. I don't want to jinx it. I took Noah to the doctor to get weighed. He is 53lbs. 8oz. That is another 2lb. gain. WOW!!! He has gained a total of 20lbs since starting Hbot. What a difference it has made with his health. He looks so good. Thank you everyone that has helped us make a difference.Merry ChristmasThe Sheaffers

My last post I forgot to mention that Noah has gained 2 lbs in the last month. When his nutritionist and I sat down to discuss a blenderized diet her goal for him was to gain 1/4 of a pound a month. Must been all that good healthy food he's been getting. I talked to her yesterday and she said to cut his calories down to 1550 instead of 1800. So we'll see how it goes......Have a Happy Thanksgiving,The Sheaffers

Little Noah has been running a fever since Weds. Scott and I took Noah to the doctor yesterday. He has a sinus infection and 2 ear infections. He seems to be feeling better this morning. I guess we can be thankful its not pnemonia. But, it still stinks that he is sick. So please pray for Noah that he is feeling 100% soon.Susan

I found this and thought I would share it....The Brave Little Soulby John AlessiNot too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Noah has been doing wonderful. He still hasn't missed anymore school. He has been on a blenderized diet now for about a month. He is looking so healthy. I took him to his nutrtionest last week and she was quite pleased with his diet. Although she would like Noah to be getting 1800cal. and 85g of protien. (To work on his lean muscle mass) Speaking of muscle..... One of his therapist saw him for the first time since last May. He said," Everytime I see Noah he has better tone." Yeah Noah!!!!!Noah was asked by his therapist to be in the Mansfield halloween parade. He went as Frankenstien in his stander. He had so much fun. He talked and laughed all the way home.Happy HalloweenThe Sheaffers

Noah has been doing great. He is toleratiang his new diet well. I haven't even had to give him anything to help with his bowels. He used to be so constipated all the time.He has been been so happy lately. It's been so good to hear him laugh and enjoy life.I believe he is enjoying himself at school as well. He seems pretty happy when I pick him up. He is still has a pretty good record. He has only missed 2 days so far.Thanks for checking in on Noah,SusanNoah says GO INDIANS

Sorry it took so long for a update. Its been a busy week. We were able to put Noah in the tank 5x times last weekend. He came home feeling 300x better. He is still coughing some but isn't running a fever.I bought a juicer today. I am hoping to add more fruits and vegtables into his diet. It has got to be better than Pediasure.(Half the stuff on the can I can't even pronounce) I have been going round and round with Noah's doctor to help us get insurance to pay for the Goat Whey we have been using. But he won't authorize it. Scott and I figure he is pretty upset because he hasn't been getting any money from us. Noah hasn't been to his office in almost 6 months. We must be doing something right.Thank you for checking in on Noah..... Pray that he gets over this cold soon.

Noah made it 2 1/2 weeks straight going to school. What a record!! But.... Wednesday night he was really grouchy. Emily asked him if his head hurt he said yes. Sure enough about an hour later he blew a bunch out of his nose. He has a sore throat and his poor little belly gurgled real loud anytime I fed him yesterday. Poor little guy :( I'm going to keep him home from school today as well.Noah has a appt. at the Cole Center on Monday. He is having his hair analyasis redone to see if his levels are any better. Three months ago it showed he had no vitamins or minerals in his body. He has been taking 9 different supplements ever since. Hopefully there is marked improvement this time.Scott, Noah and I are spending the weekend in Cincinnatti. I think I may call and see if they can squeeze Noah in at Cincinnatti Hyperbarics. Scott and I figure while we are there we may as well try and put him in the tank. We should be able to get in about 4 times over the weekend. All that good oxygen should do him some good.Take Care and God Bless

Noah started school this week. He handled it quite well. In fact he made it all 5 days. Its the first full week of school in almost 2 yrs. In the past he would go a couple of days and get sick. Hopefully it continues.

Happy Birthday Daddy!!!!! We shared Scott's birthday cake with Noah. He sure did enjoy it. He was smaking his lips and saying mmmmmm. When we asked him if he wanted more he said. " Uh Huh" Noah has really been doing well eating by mouth lately. I would say at least 70% of his daily intake is by mouth. I just wish I could find some healthy ways to add calories to his diet and not add alot of bulk. That way I could feed him only 3x a day.

Noah had a great day at therapy today. He helped turn pages of a book. When the story was done his therapist asked him questions about the story. Noah answered all of them correctly. For those of you who don't know...Noah answers yes with a long blink and head down is no. Today Noah was even answering with head shakes. I just knew our little guy understood his world around him. Today he proved that!!!!!

MONDAY, AUGUST 06, 2007 01:57 PM, CDTI took Noah and the girls to the fair yesterday. While Morgan and Emily worked in the Dairy Bar , Noah and I walked around looking at the animals. When I stopped to take a break Noah started to cry in fact he got very upset with me and started to ignore me. The girls told him he is very spoiled. I chalk it up to being more aware of things around him.

Noah went to therapy today. His therapists were very impressed with him. He was holding his head up real well while sitting on a ball. He had fun playing with shaving cream and painting. Noah has come along with his hands and arms. He has more purposeful movement."Those who say it cannot be done should not interrupt the person doing it."

Maybe many of you have wondered about what we are exactly looking for regarding Noah's health. We just want Noah to have a better quality of life. When Noah was very little Scott and I vowed to each other that we would do anything for Noah that may give him a better quality of life. We are putting our trust in GOD that Noah's miracle is on it's way. We just have to keep trying We are not looking for a "normal" child. We are looking for a child who interacts with his surroundings. A child who truly enjoys his life. Yes I would love for him to tell us he loves us and be able to run and play like other children. Its hard watching children look at Noah and ask why is he in that chair? Can he walk? What more can we say besides smile and tell them that that's the way GOD made him. Just as any parent, we only want the best for our son. Our sad understanding of our son's future is that he may never walk or even function as a normal person. We also would like to prove them wrong. I can't imagine my life without our sweet Noah. In heaven, I know my little guy will be whole, he will be happy and he will be healthy but until then we will do everything in our power to give him a fighting chance to live a happy and healthy life right here on earth. So for now I will be his voice and ask you all to continue to pray for him.In my last journal I talked about the umbilical cord stem cells. We would really like to try this. It cost $5,000 for 1.5 million stem cells. It's my understanding it may take a few times in order to get the full benifits. We'll also need money for airfare,hotel and food. If you have any ideas on fund raisers please let us know. I'm thinking about maybe a huge garage sale. If you find it in your hearts to donate money you can send to: Noah's Miracle Fund c/o Scott and Susan Sheaffer 118 W. Main St. Shelby Ohio 44875. We also still have the account at First Federal. We greatly appreciate everything everyone has done already. We are very blessed having you all a part of our lives.Susan and ScottI have loved you with an everlasting love. I have drawn you with loving kindness. I will build you up again and you will be rebuilt. Jeremiah 31:3-4

We took Emily to Camp Mowana (a church camp) this afternoon. When it was time to leave, Noah began to cry. He realized his sister wasn't in the van with us, and didn't want us to leave her. Later, we had to go to Chatfield so Scott could sing at the Lutheran Church there. I took Noah's diaper bag outside, and when I came back in to get him, he apparently thought we were leaving him, because he was crying. That's something he never did in the past.

THURSDAY, JULY 05, 2007 06:46 PM, CDTTuesday night Scott, Noah and I were in Best Buy. Noah helped pick out 2 movies. We went to the check out to pay for them. The lady at the check-out asked Noah if they were for him. He looked right at her and said Uh-huh. It was too cute.

Since Noah started going to the Cole Center we have noticed,1. He has gained 13 lbs. He was skin and bones in May 2006. He lets us know he is hungry by clicking his tongue.2. Health: Each time we come to the Cole Center he has less and less visits to the doctor because he was sick. He hasn't had pnemonia since the first part of Oct. He hasn't even been to the doctor since Nov. except for a physical.3. seizure: I can't remeber the last time he had one. He used to have at least 2x a week.4. hearing: I believe his hearing is alot better. We haven't had his hearing tested but have noticed him turning his head more to sound.5. alert and aware: His teachers and people at church have commented about Noah interacting with people around him more.6. involintary movements: Noah used to move all the time. That has completly stopped7. laughs at appropiate times: He will delibertly make you spill his water when you are feeding him and laugh. He will pee when his diaper is off and laugh.8. We took him to the Cleveland Clinic in January. While we were there the doctor was trying to look in his ears,nose and mouth. He did all he could to avoid letting them do that. She told him if he was good she would give him a sticker. He said NO. It was too funny. He also kicked the girl that was trying to draw blood. Before you would have never even cried.9. Strength: Noah has gotten alot stronger. He has gotten better head control. In fact Noah can SIT UP. Not for long but hey its a start.

In May 2006 we started HBOT with Noah. We had high hopes that this would be the one thing that would help Noah. We didn't get the big gains that we hoped for but, we got alot of little ones. Just enough to keep going. We decided that you can't have the big steps without a bunch of little ones. What are the little steps we are talking about? Check back and find out.

This blog has been created to keep friends and family updated on Noahs progressand the rest of the family.Noah was born on January 28th 1998. He was born at 38 wks. 5lbs 14oz. and 18 in. long. When he was born he was within the uterian sack. His fingers and toes were blue after 5 minutes. We brought him home after only a 2 day stay. He had a hard time sucking. He would suck on a bottle for an hour and got a ounce of food. So I would feed him for a hour and we would sleep a hour. 24/7 for months. At 4months he had hernia surgery. When Noah was 6 months old we took him to a endocronologist because he only weighed 9lbs. He also didn't have any head contol yet. They tested him for Prader Willi and Cystic Fibrosis and a ray of other things. They found nothing. It wasn't until Noah was 15 months old that we found out that he had Trisomy 8. What horrible blow that was. Since then he has also been diagnosed with Cerebal Palsy. Scott and I have always said that if there was something out there that could give Noah a better quality of life we would do our best to provide it for him. Over the last year many people have helped us provide Hyperbaric Oxygen Therapy for Noah. With that we are very grateful to everyone that has helped us out. We have seen alot of little changes in Noah.

Scott, my amazing husband!!!!!!

We have been married for 28 years and I have fallen in love with him more and more each day. I can't imagine living this journey without him, he is my rock. I'm thankful that he has stuck by me through thick and thin. I thank God for him everyday. I love you, Scott!! Thank you for being such an awesome husband and Dad to our children.

Morgan, 25yrs

What a beautiful, sweet, caring, talented compassionate human being. Morgan is a breath of sunshine. She always puts others before herself. I love how she doesn't hesitate to tell others about God. She is growing up to be a very mature young lady.

Emily, 23yrs.

How could we get so lucky to have you as a daughter. You have always gone out of your way to help with Noah. You never complain when we ask you to help out. With that we are so grateful. You are so loving and always put others before yourself. You are growing up to be such a beautiful person.

Noah, 19 yrs.

Our Little Hero

What a blessing to have around. He always has a smile and his laugh is truly contagious. He is such a brave little boy. He has gone through so much in his life time, more than most people go through in a lifetime. For that he is our hero. We love how he looks up at us with the biggest smile that his eyes disappear. He doesn't say a word but, we know he loves us.

We are truly thankful that God chose us to be Mom, Dad and sisters to such a miracle.